At our 20 week scan, we found out Rory had a complex and rare congenital heart condition called Truncus Arteriosis. We were told he would need surgery as soon as he was born and our care was transferred from Frimley to the wonderful Evelina Children’s Hospital in London. Rory was born on the 8^th April 2015 in St Thomas’ Hospital and had his first open heart surgery at 5 days old. Seeing Rory in intensive care after his first open heart surgery was a massive shock. His chest was still open and although we had seen pictures, no one can quite prepare you for the reality of seeing your tiny newborn hooked up to a multitude of machines with their bodies full of wires and tubes. After a 5 week stay in hospital, we headed home for a month before his next procedure.

In Rory’s first 18 months he had countless procedures (including another open heart surgery) and long stays at The Evelina - the longest stay being 5 months. There were some traumatic times in this period. During what we expected to be a routine Cath procedure at 9 weeks to widen his pulmonary arteries, the surgery had to be stopped as Rory had become unstable and was going into cardiac arrest. After an emergency surgical meeting, Rory was put on high-risk ECMO (a mini heart and lung bypass machine) and the procedure was done with this support. A few months later, Rory had an emergency 11 hour open  heart surgery, where we were told his odds of making it through the  procedure were around 50%. After the surgery, he was in a lot of pain and would spend hours screaming. He had to go to theatre again to have a pic line inserted, as he was so difficult to cannulate (by this time his head was fully shaved so he could have cannulas in his scalp). He has spent long stints in intensive care which has had an impact on his development and he was under feeding, sleep, OT and physio consultants for a long while. Rory did spend his first Christmas in  hospital and amidst all the tough times, he did see his first pantomime and had a visit from Father Christmas!

Rory continues to have regular MRIs and CT scans and, at the end of last year, had stents inserted to widen his pulmonary arteries. Rory has a number of problems with his heart and the condition he has will need regular monitoring and on-going intervention but we are incredibly grateful and feel very lucky for the amazing care he continues to be given. Rory is a very brave and resilient little man and has made so much progress in the last couple of years. Starting school was a huge milestone for all of us and watching him go in with a smile on his face (mostly!) makes us incredibly proud.

To mark his 5^th birthday (and my 40^th 😉) I Am running the London Marathon for the British Heart Foundation. Definitely being firmly in the eat crisps on the sofa camp, this will be a huge challenge for me. However, it will be nothing in comparison to what so many children and their families have to go through every day. During our time in hospital, we saw children lose their battle with heart disease and this is why I am so passionate about raising funds to support the research that will help make a difference. Before the BHF existed the majority of babies did not make it to their first birthday. Today, around 8 out of 10 survive to adulthood. Donations help fund top scientists research, with the ultimate aim of preventing heart disease altogether.  An example of this is Professor Paolo Madeddu, who is working out ways to use stem cell based tissue engineering to help babies born with congenital heart disease. This could ultimately mean that a graft seeded with cells obtained from the patient’s own heart tissue can become living tissue that will grow with the child. For Rory and other children like him, this will hopefully avoid or reduce the need for high risk and invasive repeat surgeries in the future. This truly pioneering research is what all donations will go towards.

Thank you so much for listening to our story and for any support you can give.

Love,

Yasmin, Ben, Noah and Rory

xxx